me

Tuesday, January 27, 2009

i have been off the computer for a long time! my eyes have been bad and my energy has been so low sitting at the computer is too much. dystonia is flaring up and i was going to get my dose turned up on my baclofen pump but a day before i was sent to an endocrinologist for a way overactive thyroid. I find this odd- but I have a swollen thyroid, 4 nodules (one is "suspicious") and guess what???? IT IS ONLY ON MY dystonia RIGHT SIDE!!! somehow this is all connected. perhaps from my throat muscles twitching alot? Perhaps getting my botox treatments (though I stopped a year ago) which were in my throat, neck, thyroid gland, and mouth? Who knows- but i have ever side effect plaguing my body right now. Sounds silly after all i have been through but you know what is the worst? The bad diarrhea! argh! It's hard enough to get to work and put on an i am ok face- but when your tummy is bad- well for me it's worse. I would rather have that gone and dystonia all the time. I have hard core tummy meds and though i take the max it doesn't stop it! So I (again) have to call the dr and ask for help. There is a problem with my shakeyamy.org site but i am having godaddy try and help me fix it- so keep it bookmarked and i will update everywhere when it is back up. ok, got to "run" and get ready for work but i have so much to tell everyone. plus per some requests i had my husband film me getting my pump refilled (it's wild to see it for myself!) and i will find time to sit and get it up on you tube. Also I would like to let everyone know the survey for people with dystonia is coming along. I do not have tons of entries but there is enough I am going to find a place to get it published and the proceeds will go to the dystonia medical research foundation during this hard time of funding and the economy all wacky and upside down. when i get them done i will update my site and also send some to the DMRF to sell on their site as well. If you don't know- the survey only has first name and age and then each persons individual story about living with dystonia. It is for anyone who wants an insight to dystonia in our day to day. another update we are still working on the overwhelming task to get all the footage from the benefit last august and getting it into a format to sell to also raise awareness and money for the DMRF. it is bad weather here (by texas standards) so i need to get ready, bundle up, and then slowly drive to work.hope everyone is doing well and the site should be up soon!-shakeyamy